Male 65 year old farmer with thrombocythemia

My hemotologist/oncologist calls ET an incurable but treatable blood disorder. I have had it for at least 30 years. I also had a job I loved (body and fender) and I guess it was the best part of my life (except family) and the ET just meant I had to take medicine. I would guess the medicine is important and see a hemotologist for details.
Hope this helps.

Not a farmer, but I can see the cornfield from my house! Worst things that can happen if you let it go:

--Stroke
--Pulmonary or coronary embolism
--Deep vein thrombosis, or tiny clots that block up veins in liver
--Platelets get too high and cause vonWillebrand Syndrome and you have internal bleeding
--Your spleen enlarges and causes eating problems

Doc should be evaluating your individual risks depending on age and driver mutation. I am 70, female, CALR+, and was only on baby aspirin between ages 55 and 63, then dr added a low daily dose of hydroxyurea. Platelets have been stable for 7 years, very minor side effects.

Some docs are using interferon injectables on older patients like us. There's a possibility this reduces progression, but older patients experience higher rates of depression with it. Ask about it.

You can also ask doc about what you can do with diet/exercise to control general clot risks. GP is often better at helping with this than the oncologist.

The "cure" is a stem cell transplant, but you have to be on your way to leukemia before they recommend it, and a lot of people don't survive that. Two cousins had it, one died of heart complications, the other got 10 more good years but side effects from maintenance drugs are catching up with him now.

Fatigue is my biggest problem and sorrow because I was always real high energy. But I have had to slow down. I tried to power through fatigue and it doesn't work. You end up exhausted, making mistakes, and alienating people. Decide what's important for you to get done in a day. Do that and learn to be grateful when you have a great day and feel like doing more.

As chronic illnesses go, there are way worse ones.

All this is just my take, and everybody is different. Take care!

I have had ET for over 20 years, diagnosed in my 40s, take anagrelide from the beginning and the platelet count is under control. I do see a hematologist. I never had symptoms, when I ask if I'm 'cured' my doctor says I can stop taking the medication and see what happens though that was a risk of stroke or other complications. Keep riding that tractor!

Did you have a bone marrow biopsy and aspiration to confirm the ET diagnosis? I've been on HU for 3 years now, rather take medication than have a stroke or heart attack (or other) It is considered a chronic cancer/disease, so like other diseases no real cure, just maintaining. Best wishes to you

I’m 70, diagnosed with ET last year at age 69. I’m a farmer by extension only-my husband is a life-long farmer, so I’m familiar with the love of the land.
I hope you will see a hematologist. My first hematologist wanted me to take Hydroxyurea right away. After researching on my own (including the great info this site), I saw a second hemo who just put me on aspirin for the time being. The point is to avoid clotting and preventing a stroke or heart attack. These are currently my biggest risks.
At first I was scared, depressed etc. ( why me?) but now I feel blessed because I’m living a normal life! As others have mentioned, just a little fatigue. My thought is this: we’re not spring chickens, and “something” happens to everyone at some point.
Find a good hematologist that you can talk to, keep track
of your blood counts, do your own research, respect what your body is telling you, and keep on farming. Blessings!

I have diagnosis found during normal blood screen prior to procedure. Seen two hematologist both specialist in cancer. First diagnosed in 2020, on daily low dose asprin. Fatigue, extreme itching and skin rashes, no definitive diagnosis on skin. After over 7 ct, mri, finally July got PET, no malignancy detected. Suggest phlebotomy to reduce RBC COUNT. Went in thinking I was getting a pint removed and they take one tube. Now say my counts 2 points shy of required phlebotomy. No biopsy, only one JAK test negative but know there are Faldo positive! I have lost 70 lbs since January 2020, sweating profusely prior to the diagnosis now cold, pain in mid back, never had pain here! No meds suggested however I’m not sure I would consider that at this point! Now they say in person risk of developing cancer but want to claim it from COPD and I’m only stage 2 after 7 years and not a big issue! I can’t get a regular hematologist to see my here in Dallas and I’m sick of western medicine gaslighting me, milking Medicare and not following their own suggested plan! I’m seeing naturopath doc and got better results with his plan than any western medicine! My greatest fear is stroke, runs in family and at 61, live alone and just trying to make better choices with nutrition, lifestyle and thinking of donating blood this month. Heal thyself is my current thought process. I hope that time and circumstances don’t cause further harm but I’m frustrated and just want to live fully! Hope you all are well and look forward to following the thread!

"I’m seeing naturopath doc and got better results with his plan than any western medicine!"

What better results did you get?

I am very skeptical about alternative practitioners. Medicare/insurance doesn't cover their treatment, and they can get very expensive.

I tried CBD oil for sleep and anxiety because many fellow patients were touting it. I researched carefully, paid $50 for 1 oz from a legit company, and it caused nothing but extreme heartburn. Come to find out, the "patients" pushing CBD were fake patients selling alternative "cures."

I'm on a fixed income, and I can't afford to flush money away on quack cures.

I hope you proceed with caution.

Oh I’ve check out many here in Dallas and most require extensive new age testing that has no benefit or proof of success. It’s all about the money. My doc is 45 minutes away I see him every two months. Vietnam vet, worked for CDC, went to medical school for chiropractic care, then studied biology at cellular level. I got a liver supplement, a lymph supplement, and 2 homeopathic medications for $107. Maintaining weight first time in 3 years, less pain, more energy, no side effects. Not trying to treat blood but when your body can process nutrients you’re taking in you have to get back to basics! Believe me after the fraud of western medicine, big pharma and insurance! I’m very cautious, however I had rather pay out of pocket than waste time, energy and money on gaslighting! It’s a shame we are struggling to get help and I think that the system is gamed against us. Natural medicine is my best hope strictly in my opinion based on my interactions. I can only try since all other avenues have produced nothing but frustration! Best of luck.

PS, you cannot donate blood or organs if you have ET or any other MPN.

Hi @splashgirl, I’m not sure if you’re aware of this or not but if you have a blood cancer such as ET you are not able to donate blood to be used for distribution. A blood center is able to do the phlebotomy if you have a prescription but the blood isn’t able to be used.